Feeling thankful.

It is one of those times when I am feeling a shift in thinking. We are transitioning to spending more time in our villa in Bowling Green. Ron seems to have a preference for being here. We have no steps inside, and we are so much closer to the grocery store and other places to shop. We get out every day, so he can walk awhile. Even so, I know that it is really not enough exercise for him, and he has chosen to no longer go to out patient PT. He does occasionally use the stationary bike. It would be dangerous for him to walk with only the cane for any distance.
Next week Ron has treatments on 3 days in Ann Arbor. Hopefully that will boost him, so we can travel at Thanksgiving. He will also have another batch of serum eyedrops made from his blood.
All of the above: DONE!
Things went smoothly during appointments 3 of the last 4 days. Ron should be "tuned up" until December! His appointments are treatments to control his graft versus host disease which is an autoimmune disease and the other infusion boosts his immunity. His central line, a neostar, balked at one of his treatments, but a power flush got it working right. He has had this line since April 2014, and it is needed for his ECP treatments and makes life a lot easier for blood draws and other infusions.
Things at the lake are pretty much wrapped up for the winter. I sold the pontoon which felt like more of a relief than sadness. Bittersweet. It caused me grief on more than one occasion this summer. There is raking that needs to be done yet, but Ron always said to wait until all of the leaves are down!
I am starting to get a little excited about the first snowfall, even though it was in the 60s and 70s this week. At the same time, I am hoping that this winter won't seem so long. Planning to spend more time at the villa and planning on NOT getting snowed in at the lake this year.
Hope that you have exciting plans for a Happy Thanksgiving! We plan to spend the holiday with Matt's and Niccole's families in Virginia.
Love, Ron and Jan

Autumn in Michigan

I didn't upload these pictures in any particular order! The turkeys are in our backyard at Gilead Lake almost daily. In the winter, they roost in the crabapple tree to eat the fruit.
We had a good trip Up North. We stayed in Traverse City and visited 3 of our favorite restaurants that we had found on previous trips. My rocking beach, Christmas Cove, was totally changed by Mother Nature. Lake Michigan is up two feet, and when the ice went out this year, it pushed an amazing amount of golden sand up to the shoreline, burying all of the rocks! Ron and I are in Sleeping Bear Dunes Park in one of these pictures.
The white barn and beautiful maple trees are about two miles from our home; I took that picture yesterday; the colors are peaking here. Gorgeous!
Ron still enjoys traveling, sightseeing, and shopping! He had to use the walker to get around on our trip; he is too shaky when just using his cane. We don't return to Ann Arbor until the first week of November, and we still hope that we can travel to Virginia for Thanksgiving.
Love to all,
Ron & Jan

September 26, 1970

I have compiled a summary of Ron's medical history, so he can have a primary care physician here in BG. This is a huge job...hardly knowing where to start and where to stop! I had been urged to do this by a new P.A. Every situation is an emergency, requiring a trip to AA, so I didn't really see the point, but I am complying. Ron will see my family doctor, so at least he will have a snapshot of who we are. Because we are returning to Michigan for awhile, he will not have this appointment until the end of the month.
Ron and I have celebrated our 45th wedding anniversary, "in sickness and in health". We spent part of the weekend with my maid of honor, our host and hostess-guest book, a groomsman, and best man. (Anne and George, Rick and Tammy, Kirk and Sue) For ourselves, we have a new recumbent bike in BG! Ron wrote me a very sweet note; he continues to thank me every day for something that I have done for him as his caregiver.

This picture was taken about a year ago; when I think back to that time, I realize how Ron has slowly declined. The two hospitalizations in June and August have affected him; he didn't quite get back to where he was before then. He has decided not to go to out patient PT any more, and he has decided to just take baby aspirin for his blood thinner. I anticipate deciding not to have the oral surgery unless there is an improvement in his overall health. With all of that being said, we are still planning to take our fall trips to the Traverse City, Michigan area and Virginia. I feel like we will be able to do that.

Again, a picture from last year. Fall is such a beautiful season, and it is a time that we will reflect on the prior months of 2015. Some of it was very beautiful and happy, and some of it was so difficult.
Love, Ron & Jan

We continue to spend time in Ann Arbor 3 of 4 weeks each month for a variety of reasons. Ron has had an ECP treatment-- his #122 I believe. He has also had an immunity infusion. Next week he will see his eye doctor and have blood drawn to have eyedrops made using his blood as a component. Those eyedrops have been like a miracle for him. GVHD caused not only dry mouth but also dry eyes, with his saliva glands and tear ducts not working right. The following week he will have 2 more ECP treatments, and then we are keeping our fingers crossed for a 2-3 week vacation from AA. We plan to go Up North to enjoy Pure Michigan's fall weather and colors.

Give hugs to your family members.

Ron is recovering nicely from pneumonia. We are finishing up his at-home IV antibiotics in 2 days. He has had a return visit to his Infectious Disease doctors in Ann Arbor. Progress is good, and he has tolerated this treatment well. He is already discharged from at home physical therapy, and I am trying to convince him that he should do some out patient therapy.
We did head to the lake on Ron's birthday, Friday, September 4. Have medical supplies; will travel. We were looking forward to family time with my siblings when our family experienced a terrible tragedy on Saturday, September 5. My niece Kara's husband Andy was killed in a car accident near Granger, Indiana. They were planning to leave for their Wall Lake cottage later that morning. My sister, Anne, and brother in law George live at Wall Lake- 10 minutes from our home. Two of their daughters' families have cottages next door to their year around home. Anne and George have made it manageable for us to keep our Michigan home. George takes care of the yard. They kept our kitty Blue when we lived in AA over 9 months. They water my flowers when we are gone, etc. George takes Ron golfing which is no easy task. We spend time at each other's homes. It has been an excruciating 10 days for them with a much-changed future abruptly thrust on them. The visitation and funeral were in South Bend, Indiana last week. With the help of my brother and sister in law, Gary and Vicki, and our son Matt who was able to fly in from Virginia, Ron and I were assisted in our trips to S.B. It was necessary to have a wheelchair for Ron. We loved Andy, too, and are heartbroken for my sister's family. Andy was an amazing husband, father, son in law, uncle, addition to our family, business man, and a personable guy. So much more that I could say here.
The picture below was taken about 8 years ago when Andy and Kara's younger daughter was a baby. Andy is holding her, and Kara is next to him. Their son is now 14 and daughters 11 & 8. Griffiths are pictured here with two of their daughters' (Jody's and Kara's) families--- all living in Indiana. Wendy's family lives in Iowa.

Happy Birthday 9-4-48!!!

Check Up Today

Today was a hospital discharge follow up appointment following Ron's week in the hospital last week. He also had his 120th ECP treatment. His care team spent a lot of time with him--almost two hours. He was feeling overwhelmed by the end and just sat with his eyes closed. I felt pretty much the same way, but I kept my eyes open. Because Dr. Mag wasn't on service for in-patients last week, there was some catching up to do even though he'd had a summary of what happened. We saw Tim briefly, Dr. Mag's nurse, and another doctor, a fellow working with Dr. Mag. He had seen Ron last week when he was observing during rounds.
We spent a lot of time talking about DVT, pulmonary embolisms, and blood thinners. Ron doesn't want to do the daily lovenox belly shots any more, and even very low dose xarelto caused too much bleeding. Other blood thinners require frequent bloodtests to monitor dosage, so Ron is taking the option of one 81 aspirin daily. baby aspirin.
Dr. Mag told me briefly about two new drugs that patients with active, early stage chronic graft versus host disease are trying now. They would not reverse the damage that Ron has to eyes, mouth, lungs, and skin, but it would be wonderful for new transplant patients to not have to go through everything Ron has.
Just to give you an example of how Ron has changed and is mellow, the new doctor when examining Ron's mouth and teeth somehow mentioned that the way Ron's mouth is restricted in how much he can open it--is called fish mouth. I said well, thanks, I would have been okay with not knowing that. But Ron thought that was pretty funny and made a fish mouth a few times to make all of us laugh.
Then we were off to ECP for 2.5 hours, and while there Ron's infectious disease doctor who is monitoring Ron's bloodwork while he is on the IV antibiotics at home, called to tell us that he is slightly dehydrated and needs to drink more fluids. But otherwise, he is doing okay on this stronger antibiotic. Next week Ron will have another ECP treatment and bloodwork. In June Ron had 9 days of IVs at home of the same antibiotic; this time he will have 18 days.
My rambling went out of control...too many details above to say that Ron is doing okay. Me,too!

A few more details...

Today was primarily changing gears. During a crisis including calling 911 and 2 ambulance rides, the adrenalin pumps you up and seems to somewhat sustain you through the questions and answers of hospital days. Then you are hyped up because you're going home; this is followed by a bit of a crash which translates to a long nap at home. Ron and I both slept this afternoon.
Cale's family had brought a Panera breakfast, and the admitting physical therapist arrived near noon and was here about an hour. Ron will have PT at home. He has walked more around the villa today than he did all week in the hospital. So many good reasons to be back home.
Ron has return appointments at U of M the next two Thursdays. While on this antibiotic, kidney function has to be monitored. This situation is a good example of why we decided to buy the villa in Bowling Green. We have had to be in Ann Arbor more weeks than not the last 3 months. Those would be trips twice as far from the lake and would have required more nights at the Hampton.
The DVT and blood thinner issue is unresolved. Ron had tried xarelto but it caused increased bleeding and bruising, so the dose was cut to 1/3 of the original to a very low dose. It was held 5 days prior to the oral surgery that is now postponed. When they resumed it in the hospital, more bleeding after only one pill, so now we will have a discussion with Dr. Mag about this Thursday. I am preparing myself that he might need to go back on the Lovenox belly shots. So many issues are related to each other.
Enough for today! I need to start tonight's infusion of cefepime. The 10:00 and 10:00 schedule works well for us.

Home!

Discharge went smoothly. Now to unload and get organized!

Home tomorrow...probably

Nothing much new today except that the sensitivity tests on the pneumonia bug in Ron's lungs indicate that he is already on the best medicine for it. Ron takes 3 antibiotics, but they do not treat this stubborn pseudomonas. That is why he will continue to require IV antibiotics at home with cefepime.
I did get a copy of Ron's chest CT scan. They compared it to June's 2 months ago. The affected area in the lower lobes has increased and now there is extensive abnormal involvement in the bronchial walls. This is a progressive issue caused by graft versus host disease in his lungs. I will request a full work up by his pulmonary doctor when he is better. It is quite possible that he will continue to not need oxygen at home. As I understand, the progression is really not predictable. It seems like the oral surgery will be delayed indefinitely.
So for now, the goal will be to get stronger, and he has some weight to gain back. He is so ready to get home, so he can sleep more. That would go for me, too. (The part about the sleep:)
They took Ron off the diabetic menu today, and he can order anything. He needs almost no insulin, he is losing weight, and I had been buying more food for him and raiding the patient refreshment room. The ECP nurses had told me a long time ago to let him eat whatever he wants to and just cover it with insulin as needed. Common sense. He stays pretty steady at about 35 lbs below his start weight but has weighed 30 lbs less than he does now. His weight now is the happy medium.
So excited that we will probably go to our BG home tomorrow afternoon.

Camping in a hospital

That is sorta what it feels like. At least we have more privileges this time to move around and use all resources on 7th floor Mott Hospital- adult bone marrow transplant wing. I eat and sleep in Ron's room, and I just finished our laundry which is located in a nook in the family lounge. I can use his bathroom and shower. You never know when one of his doctors is dropping in, and I don't like to miss any information. Ron often does not give accurate information-- for example today he told them that he had been taking walks out in the hallway. He might tell them that he has been golfing a couple times a week and riding his stationary bike 3-4 times a week. These are all things that he knows he should do and would enjoy doing. I feel bad about sitting out of his sight shaking my head no to the doctor.
Today has not been too eventful. We have learned that I will need to give him IV antibiotics for 3 weeks when we get home. After he was discharged from the hospital in June, I only had to do this for 9 days. Now they are saying maybe Friday. (Cale, thanks for taking care of Blue.) Ron is only on 1 IV antibiotic now--the one that I will give him at home. The physical therapist came in shortly to catch up on what has been happening. She has helped Ron before. She will do a formal evaluation tomorrow. She will also make recommendations about having oxygen at home. I don't know what his PT plan will be when we get home. I also don't know how our calendar will jibe with all of this. I have learned to stay flexible, and Ron's medical needs will drive the train.
Here's a funny story: Abby, our 8 year old granddaughter in Germany messaged her Aunt Nicci in VA. She said I heard that Pa is sick again. What is going on? Nicci messaged back giving an age appropriate gist of things. Abby replied, thanks. My Mom wouldn't tell me. LOL

Cancellation of lung scope

We were on the way to University Hospital About 9:45 when the transporter received a message that the lung scope had been cancelled. Actually, the same thing happened in June. The sputum culture is showing pseudomonas again, the antibiotics are knocking out the pneumonia, so they do not feel any risk warrants this procedure. Now they run sensitivity tests on the pseudomonas, so they can stop any antibiotics that are unnecessary.
Ron did have an allergic reaction to the lidocaine in his last bronch, so they were going to use general anesthesia this time. Anyway, over all, this is a good thing that they do not feel it is necessary at this time to do the scope due to potential problems for Ron. So this decision brought in a parade of doctors. First the PA was here, the pharmacist, the BMT doctor on service for hospitalized transplant patients, the pulmonary doc and team, the infectious disease doc, and the respiratory therapist. The whole team will decide how to move ahead with treatment for the pseudomonas which appears to be colonized in his lungs which means that it is not going away. (But not always an active infection)
The other good news is that is the first time in over three years that he did not test positive for MRSA or another antibiotic resistant bacteria, so this time he is allowed to leave his room, and I am allowed to use the lounge, exercise room, washing machines and dryers, and the other common areas on 7th floor. Also, everyone who comes in his room no longer has to gown up.
He might get to go home Thursday but it will probably be Friday. He will also be evaluated by a physical therapist. He is definitely weaker but has only lost about 3 pounds.
Need to post this! I have been working on it for 3 hours because so many interruptions!

(Yesterday, August 24) Happy 4th Birthday!

Ron and I shared a piece of cake last evening to celebrate the 4th anniversary of his transplant. Even though his health has been so poor, we are grateful for the numerous life events that he has been able to experience since August 24, 2011. #1 on that list would be the birth of our 9th grandchild, Lily Grace Hover, on New Years Day 2014.

Ron is supposed to have his bronch at 9:30. I am glad he is sleeping because he will be hungry soon! He has had no food or drink since midnight since he will be under general anesthesia. He has greatly improved and is just on room air already, and his heart rate and oxygen level are better than they have been, maybe for months.

I am hopeful that the pulmonary team will have a lot of information for us about Ron's lungs after the scope, biopsies, and cultures of fluids. There is never a crystal ball but some idea of what we might expect would be helpful. I think. We probably will not have any results for a day or two.

Ron's appearance has changed greatly since his transplant. He continues to have the appearance of a chronically ill person. In the ER a doctor asked me if I was his daughter. You would think I could get a little pleasure out of that because many times in the past people used to ask if I was his mother. Ron asked me if he looks old, then said: or do you just really look young? i told him no on both counts!

Not too many answers yet

The ruling out process is underway, so I guess those are answers too. Ron did not have a pulmonary embolism. He still has a bloodclot in his leg, but it is not new and is attached so is in the process of dissolving. He had negative results for a viral infection. A bloodtest shows there is an infection in his body, so that is most likely his lungs because chest X-ray and CT scan confirmed pneumonia. They are doing a bronchoscopy tomorrow because there are changes in his lungs since June. They will take fluids and tissue samples to test. His lung damage is due to chronic graft versus host disease.
Ron is on 3 IV antibiotics and oxygen and his other usual medications. His oxygen is down to 4 liters from 6, so he is improving. I think he will go home on Friday. After they find out specifically what his lung infection is, that will narrow the antibiotics he is taking.

Not So Fast

I had to call 911 for Ron this morning. We were in Bowling Green at our villa, and he became short of breath. We arrived at Wood County Hospital about 8:00. He was there 3 hours and then sent to U of M Hospital by ambulance. He has pneumonia and will be here about 4 days. He has already started to improve with IV antibiotics and feels so much better on oxygen. There is a slight chance that they will do his oral surgery while he is here. Actually, I think that might help with documenting the dental procedure done because of medical necessity. (Which will help insurance-wise.) Things feel under control.

Being strong

Moving ahead

Monday will be the 4 year anniversary of Ron's bone marrow transplant; it is also the day of Ron's oral surgery at University Hospital. He has to be at the hospital at 5:45 AM and surgery is at 7:30. It feels surreal at this point even though we've been through the preliminary appointments. Ron has been through so much but continues to be a fighter. I am sure that next week will have some new challenges for both of us.
I saw Ron's AML leukemia oncologist today. He called out to me, and we visited shortly. He was Ron's doctor for 16 months through 8 hospitalizations for aggressive chemotherapy. After bringing him to his second remission, Dr. Mag has been Ron's doctor beginning with his transplant 4 years ago.

Are you ready for some football?

Where has the summer gone? I think we always ask ourselves that about this time. I remember always being excited for the new school year to start..when I was a student and also when a teacher. Football is another sure sign that summer is coming to a close. Ron and I both enjoy the fall months that will soon be here. We are hoping to make our annual trip to northern Michigan to see fall colors and hopefully, a trip to Virginia at Thanksgiving time.
We have decided to take the plunge and have scheduled Ron for oral surgery August 24. What is left of his teeth needs to be extracted. His surgery will take place at University Hospital- U of M. This is going to be our first insurance battle. I can hardly stand to think about it! I know we have been so fortunate to not have had this be a worry earlier.
Ron continues to adjust to xarelto for his blood thinner. The first dose (which he took 2 weeks) was too much for him which led to bleeding, so now he is on a lower dose every other day. He continues to have ECP treatments to counteract his body's rejection to the blood products made by his new bone marrow. He had his 118th treatment this week. Insurance does cover his treatments.
Ron's transplant was 4 years ago this month. He has been through so many complications and hospitalizations since then. We could never have imagined how much our lives would change. There is no way to predict what lies ahead.

Fun at Gilead Lake